MFPR

Many couples we have known have gone from not thinking they would be able to get pregnant at all, to being incredibly pregnant with three, four or more embryos. After years of fertility struggles, these parents are (as someone once put it) the last ones to take even one tiny viable embryo casually. Parents may spontaneously conceive triplets, quadruplets or even higher multiples and find themselves in the same dilemma, facing their first decision as parents in a way they never could have expected.

On a semi-practical note, many have found that it is essential to determine whether two of the babies are monozygotic (“identical”) — as many actually are in pregnancies after fertility technology, as well as in spontaneous pregnancies — since most are also monochorionic and share a placenta (more rarely, also a sac) and this will very much affect what the options may be. The next step for many was to find out as much information as possible about the risks of loss and of severe handicaps, and to find those to whom they can talk freely. Both of these are difficult, because comprehensive statistics about multiple birth loss and severe disabilities are not kept in the U.S. (and would be difficult to do even if the mandate were there), so that much that is available is from patient reporting; and because anything to do with “abortion” has been so politicized in our society.

At the same time, parents are often caught between two extremes. They may be urged to make a decision by a medical caregiver who does not address what the emotional impacts may be to them, and considers the procedure a final adjustment in the fertility technology. We’ve talked with some well-meaning caregivers who think that if they don’t make a big deal of it with the parents, then it won’t be a big deal, and that “parents decide to do it and that’s it”. Thus we have talked with many parents who feel that they had to make a rushed, underinformed decision in an impersonal setting and seem to be at much higher risk for difficult emotional aftermath later, no matter what the outcome of the pregnancy. For many this is intensified by the feeling that they can’t say even a word about any of it to anyone at all when they may occasionally experience emotional aftermath. Anything that can be done to overcome this isolation and secrecy is very much to the good. We should add that none of this is made any less difficult by what often seems to be the glorification in the media and elsewhere of very high multiples, often with the implication that only a very few people conceive six or seven and if they really want to they can have them.

Many parents have commented that a very thorough decision-making process is especially crucial for those who are pregnant with three, or even four, because they will be confronted with living triplets or quads and the reality that it might have been do-able, while those pregnant with 5 or especially 6 or more can pretty much know that the odds are stacked against them and are by the same token far less likely to encounter living sets of that number (other than in the media). (Some articles on the medical aspects of whether to reduce from 3 to 2 have been authored by Michelle Smith-Levitin MD, see our Bibliography.) Those who for various reasons may be needing to decide whether to reduce to one will have some similar issues, as well as the loss of “my multiples”.

An additional factor for many potential MFPR parents seems to be the extent to which quality of life issues are important. There is the potential for any babies who “make it” past birth to be handicapped, sometimes very severely, from the effects of prematurity and other things which may occur in a high-order pregnancy and birth (and some may die in infancy or childhood as a result, or of Sudden Infant Death Syndrome, for which prematurity is a known risk factor). Some parents feel that it is not right to expect their children to be perfect or to be unwilling to do everything involved in raising a handicapped or multi-handicapped child; others feel that it is their responsibility to their children that they have a life that does not involve more suffering than enjoyment. Although the reality of handicaps in multiples who do “make it” past birth is a major one, often a heartbreaking one, it is poorly addressed anywhere that we are aware of while being a major elephant in the room when it comes to these decisions. Parents also vary in how they regard quality of life issues for the family–financial, marital, social issues of raising three, four or more at a time, whether or not they are handicapped. Some feel that it is selfish to even consider these, as long as the babies live; others feel strongly that they must be considered.

For all these reasons, we really encourage everyone who is having to consider MFPR to take the time and effort to talk with a counselor who is experienced in reproductive issues, for support in sorting through all the information and emotions for each parent and for both parents as a couple – for support in making the best decision that they can even in a short time – and to have that person as a trusted resource during the pregnancy and after the birth whenever, and for as long as, needed. We also encourage everyone to ask questions, seek information, and seek an opinion or second opinion from a perinatologist (maternal-fetal specialist).

Over the years, CLIMB has included many who have decided on MFPR. We don’t say “chosen” because they don’t consider it a choice. Their first choice is to have any and all babies of theirs alive, healthy or with a reasonable quality of life; now they are trying to take what control they can over a no-win situation that they never would have chosen. Some have reduced and then lost one or more of the remaining babies either through complications of the procedure, or from risks that are inherent in any pregnancy, especially a multiple one. These parents stress that it is essential for people to know that while it may lessen the overall risk of loss, undergoing MFPR is still not a guarantee, a price to be paid for the assurance of no further problems. It is also important to note the information about outcomes in relation to starting number that is given in Newman and Luke’s book and in Dr. Smith-Levitin’s article in Drs. Blickstein and Keith’s book (see Bibliography). They cite data showing that the higher the starting number (and also the finishing number after MFPR), the greater the chance that the remaining babies will be premature, though much less so than in an unreduced pregnancy of the same starting number.

The essence of the situation is that people have to make a decision with no way to know for certain what the outcome will be, and not able to know later what would have happened if they had decided the other way. So they need to be able to make the decision that is right for them and that they can live with better than the other, no matter what happens. If they choose not to have MFPR and lose all the babies, would that be better to live with than having had it? If they have it and lose one or more or all of the remaining babies -or not – can they live with that better than having not tried to do what they could? or will they wish they had just tried to have them all? Either way, they may face complete loss of the babies and will need to feel that what they decided was what they could live with better, despite the outcome: because either way, they can never know what would have happened if they had decided differently. Parents who do experience loss of one or more of the remaining babies after MFPR tend to feel that their actions have been thrown back in their face, even though they rationally know that the outcome could or would have been even worse had they not undergone the reduction. Like other parents with multiple birth loss they often undergo a painful period of second-guessing, guilt and “what-if’s” that have to be resolved, and which complicate the grief that they already have.

Many parents who have given birth to two (or one or three) healthy babies after MFPR have felt their decision has been reinforced – “This must have been right!”. However we have known and had as members many who had major emotional aftermath and impacts during pregnancy, at the time of birth, and in and well beyond the first year, or any combination of those, for a variety of reasons. Sometimes it is a full grief reaction. We believe that it is possible for parents themselves and for medical caregivers to identify who may be at especially high risk for emotional aftermath, especially of the very severe kind, and offer them special support in various ways. It is crucial that if parents do talk to their medical caregivers about emotional aftermath, they not be told, “Well, everyone else is fine”. Instead they should be referred or take themselves to a counselor experienced in reproductive issues.

One mother, now in counseling, who gave birth to three healthy babies who are now 2 years old, after reduction from four (and holding out for three at the last minute), has commented that for the first six months she was so preoccupied with the babies’ health and survival that she suppressed any other thoughts. She also wanted to be positive about her decision and having had a good outcome. After that she was so busy caring for three lively babies that the grief she did feel for her baby who was not there would hit her very suddenly just when she had a spare moment. Now it occurs all the more strongly for seeing the milestones and cute moments of the others, and is all the harder to deal with because of the feeling she cannot talk to anyone about it. She feels that her fourth baby would probably have survived but had handicaps of some kind. Her experience is one of the many reasons we feel that a one- or even two-year interval for following up on women who have had MFPR is not a realistic basis for studies, particularly if they are made up only of those who chose to participate, and those who did not experience loss later.

While we have much less experience with those who do not experience aftermath, or much aftermath, and cannot know what percentage they represent, it seems from what we do hear that many may still wonder from time to time what the other baby or babies would have been like, and what it would have been like, had they all been able to arrive safely. The parents may have a decision to make about whether or not, or how, to tell their children, as do those who do experience grief later. As yet there are no surveys or studies of parents with MFPR telling their children (or not) as they get older, though a few parents have told us about their experiences with this. From our other experience with talking to survivors of multiple birth loss, we think that openness is better than secrecy, if it is something at all important in the family; but by the same token, parents need to be sure to have enough support for themselves to be comfortable in sharing this with their kids in a way that is based on the kids’ needs and understanding, and not parents’ own need for support in these sometimes difficult, complicated issues.

We have also known many who chose not to have MFPR and have experienced complete loss, or loss of one or more with severe disabilities among the survivor or survivors. These parents too may experience second-guessing their decision, along with guilt and grief. A number have decided that if they were to become pregnant with high multiples again, they would “have” to do it, but have taken great efforts not to conceive more than two, three at the most, and have succeeded. Some who decided not to have MFPR have had some major emotional impact from even having had to consider it (but still preferred the chance to make a decision, to not having that opportunity).

Some articles in print on the medical and emotional aspects of MFPR are listed in our Bibliography. Anyone who has been involved in a decision on whether or not to have MFPR is welcome to contribute their story and comments to this site, and to join our Contact Registry (ask us for the form to join). Several stories which involve MFPR are in the Loss of Both or All section of this site. Also, if you are pregnant now after MFPR, please see our site section If You Are Pregnant Now on pregnancy after the loss of a multiple/s in-utero.